Alzheimer’s disease – 'Not just old age'

BAVINA SOOKDEO

SEPTEMBER is Alzheimer’s Awareness Month and neurologist Dr Nicholas Maraj is urging the nation to face the growing challenge of Alzheimer’s with compassion, planning and action.

“Think of the brain as a vast, intricate library of a lifetime’s memories, skills and knowledge,” Maraj said. “Alzheimer’s disease is like a malfunction that starts damaging the library’s structure. It corrupts the bookshelves (brain cells), destroys the books (memories), and eventually, the entire library’s system begins to fail. It is a progressive neurodegenerative disease, meaning with time, it causes brain cells to wither and die, leading to an irreversible decline in memory and cognitive function.”

He noted that dementia is the umbrella term for a set of symptoms, describing the syndrome – a decline in memory and thinking that interferes with daily activity. “Alzheimer’s disease is the most common cause of dementia, accounting for 60-80 per cent of cases,” he said. Other types include vascular dementia (often following a stroke) and frontotemporal dementia. Maraj explained that while the symptoms can overlap, they have different underlying causes, may progress differently and have different treatment types.

Asked if reliable data exists on cases in Trinidad and Tobago, Maraj explained that there is no robust national registry. Instead, figures are often extrapolated from global models and smaller local studies, which suggest that several thousand citizens are likely living with Alzheimer’s or another form of dementia. He emphasised that this lack of concrete data is a major hurdle, making it difficult to plan resources and secure funding. Globally, the World Health Organization estimates that around 57 million people are living with dementia.

What is clear is that numbers are rising. “Our clinics are seeing more families seeking help,” Maraj said. “Our population is living longer, and age is the single greatest risk factor for Alzheimer’s (estimated about 15-17 per cent of our population is above 60 years old). Add in high rates of hypertension, diabetes and smoking and the risk increases.” He also noted, “We are getting better at recognising the signs. Reduced stigma means more people are coming forward, whereas before, it might have been hidden away as “just old age” or “craziness.””

Stages of Alzheimer's

Early stage: Subtle short-term memory loss, like repeating questions, struggling to find words, or misplacing items. Personality changes like anxiety or withdrawal may occur.

Middle stage: This is often the longest. Memory loss becomes more severe, including forgetting personal history. Confusion about time and place is common, alongside needing help with daily tasks like dressing. Behavioural changes, such as paranoia, agitation, or wandering, can emerge.

Late stage: Individuals lose the ability to respond to their environment, hold a conversation, and eventually, control movement. They require round-the-clock care. The rate of progression varies significantly from person to person, influenced by genetics, overall health and environmental factors.

Treating Alzheimer's

While there is currently no cure, Maraj stressed that “…we are not powerless.” He pointed to medications such as lecanemab and donanemab, which may slow progression in select patients. But he emphasised the equal importance of non-drug therapies: “Cognitive stimulation, physical exercise, music therapy and maintaining a structured, calm environment can dramatically improve quality of life.”

As for how accessible the treatments are in TT, Maraj said it is a significant challenge. “Specialised neurological care is limited due to the small number of neurologists locally. Symptomatic medicines are available through public and private pharmacies, though cost and supply can vary. The newer disease-modifying antibodies are not yet in routine local use; they require infrastructure (amyloid testing, serial MRIs, infusion or injection programmes) and funding for this is tricky to get in this trying economy.” There is also a critical shortage of multidisciplinary teams who are essential for comprehensive care.

Prevention

While there is no guaranteed prevention, lifestyle changes may help. Maraj advised. He recommended a balanced diet, regular exercise, maintaining social connections, managing health conditions, avoiding smoking, drinking alcohol modestly and engaging in lifelong learning and mental challenges which can all help build resilience and potentially delay onset.

“Early diagnosis is empowering,” Maraj emphasised as it allows families to plan for the future; legally, financially, and medically, while the person with Alzheimer’s disease can still participate in decisions. “It opens the door to treatments that are more effective early on” he said, adding, “We can encourage screening by normalising memory check-ups, as part of routine health after a certain age, just like we do for blood pressure. Community health fairs and GP education are key.”

Maraj stressed the need for a national dementia plan in TT. Key priorities include public awareness campaigns to reduce stigma and promote early detection, training healthcare workers to better recognise and manage dementia, and establishing memory clinics (linked to neurology, geriatrics, psychiatry and social work) within the public system. He also highlighted the importance of formal support for caregivers – through groups, respite services and financial aid/tax benefits (for families who often sacrifice their livelihoods to provide care) – as well as investment in local research to gather local data.

He believes a dedicated neurological centre would transform care by offering early diagnosis, multi-disciplinary treatment, family education, and research under one roof – ending the fragmented journeys families now endure. It would raise regional standards, retain local expertise, attract specialists, and open doors to clinical trials.

While global research is promising, Maraj said the Caribbean must build capacity now – through advanced diagnostic tools (like PET scans) and trained personnel – so patients can benefit from breakthroughs without delay.

For caregivers, his message is that you are not alone. “This is not your fault. This is a journey no family should walk alone. It calls for a national response built on compassion, science and collective action. By talking openly, supporting our caregivers and demanding better resources, we can ensure that every individual facing Alzheimer’s is met with dignity, love and the very best care we can provide.”

Maraj's advice to families

•Educate yourself: Understanding the disease helps you interpret behaviours not as malice, but as symptoms.

•Plan for safety (driving, falls, medications, finances) and complete legal documents while your loved one can participate.

• Practice self-care: Caregiver burnout is real. Accept help, take breaks and connect with support groups or counselling.

•Focus on connection: Even as memory fades, the emotional core remains. Speak calmly, hold a hand, listen to music together and live in the moment. Your love and presence are felt long after names are forgotten.

•Seek help early: Don’t wait for a crisis. Talk to your doctor. Reach out to the Alzheimer’s Association of TT.

Empowering families, supporting lives

Dr Liane Conyette, president of the Alzheimer’s Association of Trinidad and Tobago, reinforced the urgency of tackling dementia nationally. She noted that misconceptions – such as dementia being “a normal part of ageing” – remain widespread, even among healthcare workers. “As an association, we see firsthand why the work of our association is so important. We work to bridge these gaps through education, awareness, and advocacy – ensuring that dementia is recognised as a type of neurocognitive disorder, not an inevitable consequence of ageing” she said. “Our goal is to empower families and communities with knowledge, so that persons living with dementia receive the dignity, care and support they deserve.”

Questioned on how prepared our healthcare system is to meet the rising demand for dementia care, Conyette pointed out that the system is making meaningful progress in addressing it. “Memory clinics are now operational across the country, and there are healthcare professionals trained locally, regionally and internationally in neurology, psychiatry and geriatrics,” she said noting that multi-stakeholder consultations are underway to develop a National Dementia Plan, alongside investment in community-based supports. “While we have made important strides, more trained professionals are needed, and continued coordinated efforts across sectors are essential” she stressed. “Dementia care extends beyond the healthcare system alone, requiring collaboration across education, social services and community organisations. With sustained commitment, TT can build a dementia-friendly health system that responds with dignity, equity and compassion.”

Conyette explained that caregivers of people with dementia face physical, emotional and financial strain. “Many are family members who have little or no formal training, which makes managing daily care, behavioural changes and communication difficult” she said. “The caregiver burden is compounded by limited access to respite services, community support and guidance, as well as social isolation and stigma.” She noted that addressing these challenges requires investment in caregiver education, formal training programmes, accessible support services and community engagement, ensuring that both caregivers and the persons they care for can live with dignity, safety and quality of life.

Conyette also urged workplaces to support employees who are caregivers or living with early-onset dementia, through flexible policies and access to counselling and support services. She added that neighbours, friends and communities can make life easier for people with dementia by showing patience, understanding and empathy.

The association’s support groups help families navigate the challenges of dementia by providing both emotional and practical support. Caregivers gain a safe space to share experiences, reduce isolation and receive encouragement from others on similar journeys. “These meetings also feature professionals such as lawyers, counsellors, gerontologists and dieticians, offering expert guidance on legal, medical, nutritional and psychosocial aspects of care” said Conyette.

There are four support groups in the following areas:

•Port of Spain (first Saturday of each month)

•Tobago (second Tuesday of each month)

•East (second Saturday of each month)

•South (last Saturday of each month)

The association also facilitates educational programmes and outreach initiatives.

A caregiver’s perspective

For many families, caring for a loved one with Alzheimer’s is a daily balancing act. One caregiver, a teacher whose mother was diagnosed three years ago, described the experience as “a real challenge.”

Her mother now requires constant care and after several attempts to wander off, safety gates and other costly measures had to be installed at home. Because both parents are ailing, she hired two nurses to cover shifts when she cannot not be there. Even with this help, the juggling act is immense: “It’s managing my five-year-old’s school drop-offs, organising meals and medications, liaising with the nurses, doctors’ visits, and then trying to be present mentally at my own job.”

When asked what would make things easier, she laughed: “If there were at least three more of me.” But behind the humour lies the weight of the struggle. “Some days I think of quitting my job to be there for my mother, but I don’t know how I would make it financially. More support, more time off work, someone to help with errands or lighten the load of appointments – that would help so much. And honestly, even something simple like a massage. I would give anything to have the time to just take care of myself too.”

For support contact the Alzheimer’s Association of TT at 345-6549 or alztrinbago@gmail.com.